From the AlzAuthors Blog: Meet Blogger Liza Nelson in "Alice in Memoryland"

By Liza Nelson

Before my husband was diagnosed, I had never heard of MCI. Before my husband was diagnosed, we teased each other about our failing memories. Yes, he was weirdly forgetful, but I was worse at names--speaking of which, on my blog Alice in Memoryland I have changed our names to Alice and Ralph at the request of my husband, a private man. He is a man with a sense of humor, a fondness for “The Honeymooners,” and a not infrequent desire to send me to the moon.

In the two years before my husband was diagnosed, as his memory and mood deteriorated, our joking with each other dried up. I was increasingly scared and embarrassed for my husband, more often angry with him. Our long marriage had been passionate, but often out of kilter as our two strong personalities engaged and clashed and re-engaged. Then, in our late fifties/early sixties, we seemed to have found a happy equilibrium and began enjoying our marriage in earnest. Now here was Ralph ruining everything with what I saw as his inattention and disinterest in me and our lives.

Then came the diagnosis: MCI verging on Early Alzheimer’s. It has frankly been a relief to have a name for the still subtle but profound transformation in Ralph’s mental process affecting his behavior and our relationship. For the last five years, since a spinal tap showed the plaque build-up that predicts Alzheimer’s, the changes have been incremental but profound as we wait for his condition to slide into full blown Alzheimer’s, a disease that will strike more and more couples in the next decades.

Every case of memory loss or dementia, or any irreversible illness for that matter, is different. I cannot speak for anyone else going through the early stages of memory loss with a spouse. But having read other blogs and several books, I wanted to do something slightly different in sharing our experience. Starting from the beginning of Ralph and my journey down the memory rabbit hole, I have tried to use both key moments and the smallest details of our life to explore my own reactions, as a caregiver and also as a woman and a wife. After all, marriage is a relationship based on choice and commitment, not to mention the emotions and intimacy of love that poets and philosophers still struggle to understand.

Although I have published in the past as a novelist, poet and journalist, writing the truth about my past and present life with Ralph has been an enormous challenge. While I write about the moments of joy—and those moments do still happen—I also write frankly about my darker moments and feeling. I am frequently afraid that I am going to disgust readers in exposing my selfishness, my lack of patience, my resentments, and sometimes my fury. Instead, whenever I think I may have gone too far, readers respond with enormous support. They seem to appreciate putting a truth they recognize into words, however unpretty it may be.

It’s an incredibly lonely business caring for someone on the Alzheimer’s spectrum. I am so glad I have found a community in which I can speak my truth and be heard, that in helping others I have found help in return.

About the Author

Liza Nelson, who writes her blog Alice in Memoryland  under the name Alice Cramdon, is the author of the novel Playing Botticelli and co-author of the James Beard nominated The Book of Feasts. She has worked as a journalist, dramaturge, real estate manager, wife and mother. She lives on a farm outside Newnan, Georgia.

Connect with Liza

Facebook

Author web page

Twitter: @LizaNelson1

@AliceMemoryLand

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and dementia please visit the AlzAuthors Bookstore. 

From the AlzAuthors Blog: Jacqueline Marcell and “Elder Rage, or Take My Father... Please! How To Survive Caring For Aging Parents ”

By Jacqueline Marcell

I never dreamed I’d have to give up my television career when I was thrust into caring for my challenging father and sweet mother. The experience was incredibly heart-wrenching, but once I finally figured everything out medically, behaviorally, socially, legally, financially, and emotionally, I became obsessed with writing my first book “Elder Rage” (with humor to make it palatable), and a passion to help others avoid the pitfalls I so unnecessarily experienced.

For eleven years, I pleaded with my obstinate elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I hired soon sighed in exasperation, “Jacqueline, I just can't work with your father. His temper is impossible to handle and he’s not going to accept help until he's on his knees himself.”

When my father’s inability to continue to care for my mother nearly resulted in her death, I immediately flew from Los Angeles to San Francisco to step in, despite his loud protests. It was so awful to have my once adoring father be so loving one minute and then call me horrible names and throw me out of the house when some trivial little thing set him off. I took him to several doctors and even a psychiatrist, only to be flabbergasted he could act so charming when he needed to.

Finally I stumbled upon a thorough neurologist who specialized in dementia, and put my parents through a battery of blood, neurological, memory tests, and PET scans. After ruling out numerous reversible forms of dementia and evaluating their many medications, he shocked me with a diagnosis of Alzheimer's in both of my parents – something all their other doctors missed entirely!

I realized I’d been coping with a disease that appears to come and go, and that my father was trapped in his own bad behavior of a lifetime of yelling to get his way, which was coming out in intermittent over-the-top irrationality. I learned that demented does not mean dumb (a concept not widely appreciated), and he was still socially adjusted never to show his Mr. Hyde side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.

It is quite a roller coaster ride how everything finally got worked out, but it also led me to the motto I have shared ever since: When life takes you to your knees and nearly destroys you, search for the Silver Lining because those hardships may also lead you to your highest purpose, passion and reward.

Purchase " Elder Rage"

About the Author

Since I had never written anything but a postcard and self-published, I am honored “Elder Rage” became a Book-of-the-Month Club selection, a caregiving book first. It received 50+ endorsements and 550+ 5-Star Amazon reviews, became required reading at numerous universities, and was considered for a film. It’s in print, audio, eBook, and autographed via PayPal.

Soon I was invited to speak at conferences and I adored being able to personally help so many caregivers. Eventually I became an international speaker on Alzheimer’s, and then a few years later unfortunately a speaker about my own invasive Breast Cancer. I also discuss Caregiver Stress and Illness, Elder Abuse, and Alzheimer’s Termed Type 3 Diabetes. To book a speaking engagement visit my website.

Connect with Jacqueline Marcell

Website

Twitter

Facebook

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From the AlzAuthors Blog: Alzheimer's and Dementia Caregiving Stories Vol. 1

AlzAuthors, the global community of authors writing about Alzheimer's and other dementias, is pleased to announce the publication of Alzheimer's and Dementia Caregiving Stories: 58 Authors Share their Inspiring Personal Experiences, Vol. 1. This poignant collection of stories grew out of the first year’s blog posts on AlzAuthors.com, from June 1, 2016 through May 31, 2017. Within its pages, you will be immersed in a world of writing about Alzheimer's and dementia.

The contributing authors have all been touched by Alzheimer’s and dementia, whether they live with the disease, are caregivers, or simply care. They reveal the story behind their books, what made them sit down and painstakingly share their story, and what they have gained from doing so.

This year-long project was made possible through the collaboration of seven women, all daughters of dementia. We have worked tirelessly to find and vet resources – memoir, novels, nonfiction, poetry, children's books, and blogs – to provide those living with dementia a friendly place to find the support and knowledge they need. We believe that by sharing our stories we open a dialogue that not only reduces the stigma surrounding a dementia diagnosis, but enlightens others to the reality that “I made it through. You can too.”

From the AlzAuthors Blog: Meet Tracie Bevers, Author of "Dancing Around the Chaos," an Alzheimer's Love Story

By Tracie Bevers

In the early days of the disease, when I heard stories of others in later stages, I actually thought… "Well, I know that will never happen." Little did I know what the future held; I was very naïve. Many times along the way, I would remember something a friend had shared with me two or three years prior, and reality would settle in. We were there; those things were happening. It was hard, no doubt, but at least I knew others had been down this road.

As we journeyed through Alzheimer's with Mom and Dad, I regularly took notes, sent emails to our kids, took pictures…that sort of thing. Somewhere along the way, I decided that one day I could write a book with all the notes I was taking. I had become passionate about sharing the story and encouraging others, and I wanted to share our journey with people who needed to hear about it.

My reasons for telling the story are:

1.) To help others beginning the journey – to share information that may be helpful to them, even if it is hard to tell…and hard to hear.

2.) To make it clear to those who don’t understand what Alz is…it is a cruel disease of the brain affecting 5.7 million Americans. According to the Alzheimer's Association, that number could rise to 14 million by 2050.

3.) To share a sweet story of two people who loved each other to the end. Their journey made it possible for others to witness a true, one-of-a kind love story and raised the bar for many.

It's not an easy story to tell, but the truth is – Alzheimer's is not easy. If I didn't tell the real story, even the parts that make us uncomfortable, then I'm not sure any of my three goals would be accomplished. I have struggled…hoping others don't think I shared too many intimate details, but mostly praying that Mom and Dad would approve. Now, I know that if they could hear the stories about how their journey is helping others, they would be pleased. 

From the AlzAuthors Blog: Meet Malia Kline, Author of "Sisterly Shove," an Alzheimer's Caregiving Story

By Malia Kline

When our mama was diagnosed with infiltrating pancreatic cancer and given three-to-six months to live, she was the sole caregiver for our 87-year-old father “Papa,” who was in the early stages of dementia. Over the next 13 years, my sister Diane, a pathologist, and I shared care of them from opposite coasts and opposing viewpoints, often engaging in hand-to-heart combat over what constitutes quality of life. Sisterly love turned to Sisterly Shove in the new book we co-authored.

After hearing the news that Mama had pancreatic cancer, Diane proclaimed her “a goner.” But after she became dissatisfied with both the home care I arranged and the health care system in our hometown in North Carolina, Diane took Mama against doctor’s orders to live in her home in a California beach town. She quickly discovered that the wild card of having someone like Papa with dementia in the mix made cancer care and practicing medicine impossible for her.

Papa ping-ponged back to me in North Carolina and lived in a memory care facility I loved for five years. But after he broke both hips, Diane eldernapped him from the facility, quit practicing medicine, and doctored him by herself 24/7 for more than seven years at her home in California.

The story my sister and I tell in Sisterly Shove reflects a new kind of sibling rivalry among baby boomers: Which sister, or sometimes brother, is best willing and financially able to care for and make life-or-death decisions for elderly parents, especially in light of their own obligations to young children? Is it possible to share care among siblings, especially in a strong-willed and highly opinionated family like ours with a both a sister and brother who are doctors calling the shots long distance?

From the AlzAuthors Blog: Meet Jane Mullins, author of "Finding the Light in Dementia, a Guide for Families, Friends and Caregivers"

By Jane Mullins Ph.D., from Cardiff, U.K.

I am a nurse who has worked with people who have dementia for over 25 years. This has included nursing in a care home where I have helped support people during their transition from home. This has included finding out about their life stories and getting to know them, working together in understanding their past, identifying their present needs and future wishes. 

I have also cared for people who have dementia in hospital and seen the impact that an admission can have on the person and their dementia. Here, I recognised the importance of involving families and keeping familiar meaningful objects with them when in unfamiliar places.

From the AlzAuthors Blog: Meet Susan Soesbe, author of "Bringing Mom Home: How Two Sisters Moved Their Mother Out of Assisted Living to Care For Her Under One Amazingly Large Roof"

By Susan Soesbe

How do you write an honest story about a real-life tragedy without being so tedious and somber that nobody wants to read it? This was my challenge in writing Bringing Mom Home: How Two Sisters Moved Their Mother Out of Assisted Living to Care For Her Under One Amazingly Large Roof.

When Mom was in her seventies, the idea that she had dementia sort of came and went, like back pain. My suspicions would flare up when she did something out of character, like purchase an expensive juicer, though she had not one shred of interest in healthy eating. But then she was still able to drive, email, and play Rummikub, a math game.

However, the dementia eventually became obvious. My sister and I convinced Mom to move to an assisted living facility, and then to a memory care unit. Even there, she was constantly in danger of falling. We were able to move her home to live with our two families. Hence, the title of my book.

I started to write then so I could share the knowledge I was gaining. I had thought Alzheimer’s Disease was just memory loss. Now I was learning it involved a loss of executive function, personality changes, hallucinations, and loss of bladder and bowel control. If I had known this before, I thought, I would have shown more concern for caregivers. I would have been better prepared myself.

I knew my story would benefit others, but how could I make it readable?

From the AlzAuthors Blog: Meet Terri Anderson, Blogger at "The Caregivers Depot"

Sometimes the Caregiving Journey Chooses You

By Terri Anderson

There are several ways where people find themselves as a caregiver. Some by choice, some not. I didn’t choose the caregiving life. It chose me, but God doesn’t give you anything you can’t handle. I thought to myself that I wasn’t up to the challenge, but I was. You see, my estranged father had a combination of Parkinson's and Alzheimer's and at the time, like many people, I wasn’t familiar with the disease.

My dad’s caregiver told me I “needed to see” my father. I remember him not knowing who I was and telling me that he had to “mow the grass.” As a child, my dad had the best-maintained yard in the neighborhood. His caregiver also said that he would “fight her,” and she could no longer care for him. He was placed in a nursing home and passed shortly thereafter. Knowing more about dementia now, I realize he was probably very combative. With nursing homes often short-staffed and nursing assistants overworked, I imagine they did not like caring for him.

From the AlzAuthors Blog: Frank Morelli and "No Sad Songs," a Young Adult Novel

By Frank Morelli

The concept for No Sad Songs had been building since my high school years. Back then, I was living a pretty charmed life. I went to school, played sports, and lived on a nice, suburban street. My life was about as “normal” as any teenage life could be.

Then we started noticing changes in my grandfather. Little things. Like, he’d forget to send birthday cards which he’d been known to send early, or he’d lose his keys or forget an appointment. Then it seemed like we went to sleep one night and woke up the next morning and my grandfather was this completely different person; one who needed assistance just to get through the daily tasks of living.

That assistance came in the form of my father, a man who worked full time and dedicated every other waking second to keeping my grandfather out of a nursing home. He did a good job of masking the toll it was taking on him, but he could never hide it from me. And although I never said it to him, I couldn’t get past the thought: what if it had been me? What would I have done if my father hadn’t been around to absorb the family responsibility before it ever spread in my direction? How would I have responded? Would I have survived?

From the AlzAuthors Blog: Blogger Heidi Hess Saxton

When the Unthinkable Becomes Inevitable: The Awful Dawn of Dementia

By Heidi Hess Saxton

Up to this point in my life, most of my blogging has been for parents of adopted, foster, or special needs children. Back in 2002, when my husband and I first became foster parents (and later adoptive parents), we really had no idea what we were in for. Which was probably a good thing, because I’m not sure we would have had the courage to move forward with it, had we known.

Now, as I’m entering the sixth month of caring for my mother, a dementia patient, I’m realizing that this is a lot like that. Lots of dirty laundry and temper tantrums, interspersed with moments of sweetness and delight. The tumultuous relationship we had during my teen years is gone. These past six months have been the sweetest, yet in many ways also the hardest – for both of us. But even the hard times are not without their rewards. For instance, when my daughter is being her snarky teenage self, she will do for her “Mammy” what she would never do in a million years for “Mean Old Mom.”

From the AlzAuthors Blog: Lisa Hirsch, author of "Letter to My Mom" and "My Mom My Hero"

by Lisa Hirsch

My mom has Alzheimer’s disease for 14 long years. Out of her suffering from this disease not only was my love for her transformed, she also became my hero. My love and compassion for her inspired me to share our journey.

What is amazing was that as a teenager I always wanted someone else’s mother to be mine, yet today I would never trade Mom for any other mother in the world. Each day she continues to touch my heart with a deep pure love. Through the years as the disease has progressed, I have watched Mom as her world has been disappearing. 

I often get questioned if she knows who I am. My answer is always the same. In my heart I know that she knows me. She may not say my name, yet when we are together we hold each other’s hands as if we were “young lovers” never wanting to let go. Our roles have reversed and with that my love for her has only grown.

From the AlzAuthors Blog: AlzAuthors Books are Setting Sail on a Dementia Friendly Alaskan Cruise!

During the week of September 15 - 22, 2018, a cruise specially designed for caregivers and their loved ones living with early-stage dementia is setting sail for Alaska, aboard Holland America's Signature-class cruise ship, MS Eurodam. AlzAuthors is thrilled to be supporting this wonderful trip!

This adventure is a unique CRUISE and CONFERENCE all in one. Families will sail round trip from Seattle, Washington with Elite Cruises and experience the beauty of Alaska with stops in Juneau, Glacier Bay, Sitka, Ketchikan, and Victoria, Canada.

Families will also experience diverse programming during an immersive conference that takes place onboard. This includes: Healing pain and grief through sharing their stories; adapting homes for dementia; creating care partnerships; nutritional care for caregivers and their loved ones; and much more. The cruise organizer, Kathy Shoaf, has put together a wide range of programming created for the complex daily lives of those living with dementia and their care partners. Plus, families will be spending time with others who share many of the same joys and sorrows, providing an opportunity to build new friendships too. Vacationers will return home with a renewed spirit, reconnected to joy and ease in their daily life.

From the AlzAuthors Blog: Vina Mogg Blogs about Life as an Alzheimer's Caregiver in "Seaglass Life"

By Vina Mogg

Not Alone

At a caregiver’s conference in Orlando I read a poem I had written during the opening assembly. Three things that happened there marked my writing journey.

A Florida State Representative, Mark Pfaford, key advocate for the Florida's Alzheimer's Disease Initiative (ADI), a bill that provides services to meet the needs of individuals and families affected by Alzheimer's disease, spoke to me after the reading, saying, “Your words give a face to the bill we support.”

An elderly man in the audience stood up and asked, “Where can I go for help? Who can help me care for my wife?”

Three women approached me in the lobby, telling me, “Your poem says exactly what I am feeling inside.”

Each cry isolated calls out the same question:

Am I alone?

Who will help me?

At that moment I asked myself, Who will be a voice for these people?

A voice deep inside me answered, “Here am I. Send me.”

From the AlzAuthors Blog: Barbara Ivey Blogs about Alzheimer's at "The Perfect Thing"

by Barbara Ivey

I never cared for my mother during her Alzheimer’s.

My Dad considered Mom’s care to be his duty as her husband. To Dad’s credit, he took full command of Mom’s care and served her with honor. 

Still, from the start, I knew there were ways I could contribute. My challenge was to figure out how to do so, from where I lived ninety miles away. Having had remarkable results using Lean in my consulting practice, I wondered how I could apply those principles to this situation. 

In Lean, processes can be improved when defects and other kinds of excess are identified. I set my mind to contributing in different ways and learning from the results.

Defects in the contributions I made were easy for my Dad to spot and point out. I overstayed my welcome several afternoons, unaware that Dad was clearing the decks before Mom began sundowning, and Dad exploded in anger. I pushed Dad to consider care options that he had yet to believe would benefit Mom, and Dad pushed back.

Each time, I improved on the defects that Dad identified, and tried again. Each time, the lessons I learned by identifying and addressing the defects were treasures. I learned that at times my father knew best. I learned that at times I knew best. I learned that Dad needed more patience, more compassion, more forgiveness, and more love during caregiving than I ever imagined. And I learned that at times I needed the same from my husband as he supported me in my unique brand of Caregiving.

The Perfect Thing blog is for you if you are in a similar place in your life. If you have a parent diagnosed with Alzheimer’s and a parent who is a Caregiver. In the blog, I share true stories of my family events during my Mom’s Alzheimer’s. I share my defects and what I learned by identifying and improving on them. I offer questions you can ask yourself to challenge your assumptions. I share things that improved my family’s journey, or that would have had they been available back then.

From the AlzAuthors Blog: Dr. David Davis and Joko Gilbert's "Support the Caregiver"

By Dr. David Davis and Joko Gilbert

As anyone who has walked in our shoes knows, there is a vast hole in the heart of a caregiver who, by a twist of fate, must tend to the needs of a Loved One suffering from Alzheimer’s. A hole that has the power to reshape and redefine who we are, for the rest of our lives. So, if we can approach this incredibly difficult challenge with the awareness that caregiving can be an opportunity for healing and growth, it allows us to step back from the precipice, where frustration, sadness and exhaustion await.

My sweet wife Linda was diagnosed with Early Onset Alzheimer’s in 2009 at the age of 51 years old. She survived for 7 years until her death last year. We are simply not given the tools and strategies to deal with the burden of caregiving and the toll it takes on every aspect of our lives. Having practiced chiropractic for  many years, I had a strong grasp on the principles and practices of healthy living, which was the fuel for my desire to come through this experience as a better version of myself, and to embrace the profound lessons as a caregiver, allowing me to more fully integrate into the world.

The thought that we can bring insight into the community of caregivers to ease our collective burden, as well as  provide inspiration and information to elevate the conversation from one of support to one of empowerment was the motivation to create our book, Support the Caregiver, 9 Strategies for turning the stress of ALZHEIMER’S CAREGIVING into Transformational Growth.

From the AlzAuthors Blog: Catherine Hodder. Esq. and "Estate Planning for the Sandwich Generation"

By Catherine Hodder, Esq.

I was a corporate and banking attorney when my father began experiencing mini-strokes and having difficulty with his memory. We didn’t know at the time he was embarking on a ten-year battle with Alzheimer’s disease. And what a battle it was.

Even though I was well versed in law and finance, it wasn’t until I faced my father’s illness that I understood the importance of having proper estate planning documents. The more I learned, the more I realized there is a great deal of information most people (even attorneys) don’t know.

From the AlzAuthors Blog: Karen Severson, MD, author of "Look, I Shrunk Grandma"

By Karen Severson, MD

This book has been in my head for years. It started with the constant frustration of being caught in the middle of disagreements between nursing homes and families. Sent as a representative of the nursing home to address aggressive behaviors, nurses would relate to me how horrible and dangerous the person with dementia was acting. People were getting injured and care was not able to be performed. I would speak to the families and they were angry with the homes. “They are trained to handle these problems. Why do you need medications?” The families felt the homes were medicating for staff convenience.

From the AlzAuthors Blog: Iris Waichler

By Iris Waichler

I began writing my book, Role Reversal: How to Take Care of Yourself and Your Aging Parents, as a tribute to my father, Melvin Sneider. I knew he was an extraordinary and giving person who had touched many lives. When I began writing he was 95 and in good health after recovering from a cerebral hemorrhage at age 90.

Suddenly things changed. He was hospitalized for pneumonia. As it happens with many seniors, he suffered a cascade of medical problems. They included irregular heartbeat, inability to eat food except if it was pureed, memory issues and dementia, incontinence, and decreased mobility. He was unable to get dressed or bathe without help. His decline continued until his death at age 97.

From the AlzAuthors Blog: Mary Edwards Olson and her Memoir "When the Sun Shines Through"

By Mary Edwards-Olson

I wrote When the Sun Shines Through because of my personal journey. I was a caregiver for my mother and watched first hand as Alzheimer's slowly stole her from us.

My mother, Elizabeth Edwards, lost her fight with Alzheimer's on October 23, 2017.

Caring for my mother was a roller coaster of emotions. You go from crying so hard that every inch of your body aches, to being so overwhelmed with joy when a piece of them perks through the mask of Alzheimer's. I was ignorant to this disease and its cruelty until I watched it slowly take my mother, piece by piece. It was hard as a caretaker to understand that Mom wasn't Mom anymore in terms of behavior. There were days I thought she was being lazy or difficult on purpose and I would get so upset. It breaks my heart I ever thought that. It was the disease, in those moments. Please remember it's the disease. Your loved one is in there, scared and confused. Show compassion and remember to take time for yourself. As a caregiver, we often take a back seat, but remember your loved one needs you to be happy, and emotionally and physically healthy. They may not express it but they understand.

From the AlzAuthors Blog: Meet Ann Balcom, Blogger and Author of "The Blue Velvet Drape - Dealing with Dementia"

By Anne F. Balcom

Mom was diagnosed with dementia in 2006. From the moment my parents told my sister and me the news I began losing sleep, a lot of sleep. The worry of “How were we going to get through this?” was eating me up. I would lie in bed at night for hours thinking and crying while my husband and kids were sleeping.

After many sleepless nights, I began getting out of bed in the middle of the night, going to the living room and jotting down my thoughts in a journal. I had so many thoughts and concerns that I could not write as fast as my thoughts were coming, so I began to type them. I would print out what I typed and tape it into my journal.